Longterm Care: A Longterm Issue
Published July 23, 2009 @ 02:26PM PT

In Derby in the UK, the City Council is planning to turn a former Viking village into a day center for adults on the autism spectrum. As reported in yesterday's Derby Telegraph, plans are in the works to close two smaller centers and use the funds from selling them to renovate the Viking village. On the one hand, the opening of a new facility that might offer better options seems hopeful, but locating it in a site meant for tourists (and a "failed tourist attraction" at that) has some unpleasant connotations. Will the new facility be integrated into the surrounding community, or is it set apart and separate?
Here in New Jersey, Disability Rights New Jersey is suing the New Jersey Department of Human Services on behalf of the family of a 41-year-old man who lives at the Hunterdon Developmental Center in Clinton, yesterday's Star Ledger reports:
Rosamund and Daniel Caliendo of Hampton said they arrived at the Hunterdon Developmental Center in Clinton for a holiday party on Dec. 1, 2007, to find their son, Damian, in his electronic wheelchair facing a wall with the chair's front wheels suspended in the air and the tray table jabbed into his stomach.
Their son, who cannot speak and is diagnosed with cerebral palsy, a seizure disorder and other medical conditions that required neck surgery a year earlier, "was scared to death he was going to fall," his mother said. No one at the party came forward to explain what happened to Damian, who has lived at the institution for 30 years. The family believes an employee placed him in an unlawful restraint to punish him. They filed a complaint and demanded an investigation.
The Caliendos were only given a summary of the report.
I'd be tearing my hair out if that was all I was told I could know about such a document regarding my son.
And on the other other hand, it's possible that the new center in Derby might be better than alternatives. The July 20th Disability Scoop reported that some two dozen families in Canada have had to relinquish their parental rights and, in effect, make their children with severe disabilities wards of the state.
We've got too long a way to go to figure out appropriate, safe, sufficiently staffed and well-supervised options for individuals with disabilities who need this care, and to make it clear, families and caretakers must be included in every way.
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I thought that we had FIXED the Canadian thing! We were one of the families from the case 4 years ago which was supposed to make this situation stop forever. (The original Ombudsman's report is here (http://www.ombudsman.on.ca/media/3277/between_a_rock_and_a_hard_place_20050520.pdf) - obviously I'm the one with triplets.
I can't even tell you how upsetting this is- obviously I've been out of touch.
Posted by Jen Niebler on 07/24/2009 @ 02:43AM PT
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